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Wish professionals would put themselves in our shoes

I wondered if the professionals that pass judgement and provide the services or education for our SEN children would behave differently if they put themselves in our shoes?

If they felt the sheer force of indescribable mixed emotions at nearing September without a school placement for a six year old girl … Would they keep me more informed and try to advocate better for my Dinky?

If they felt the sheer determination to get the right help… Would they try harder?

If they spent more time talking to me as a parent rather than reading about case CHILD-A08… Would they understand better?

I want to give them a window into our life so they can see the impact of their delays, indecision and pure unprofessionalism.
I want them to see Dinky, see PDA and see that we are doing the best we can in extremely trying circumstances.

I want them to see that every time they brush me off, or get offended at my way of expressing my dissatisfaction and compromise their own integrity- it just exacerbates the truly difficult time this is.

I want then to see that when I am angry with them, it’s not personal, it is completely due to my complete and utter frustration that Dinky is not getting what she needs.

I look back and I think wow. I think wow because this time last year the consensus was that Dinky was just naughty and possibly had PDA but the doc didn’t know what that was, but she wasn’t autistic and had probable ADHD. Now I fought for her to see someone who understood PDA and now she has 5 diagnoses PDA included in that, she has no school and I have fought and got her a statement (without a named school). We have a social worker who is now trying to understand more, she is still a muppet but at least she is trying.

Dinky, well, it has been a tough time, these last few weeks I have really noticed how hyperactive she is, how much she lacks attention and concentration- I’ve always been aware of how impulsive she can be. It is really difficult, especially going out and about with a lad who has ASD, ADHD and other issues. The pair of them in any situation where they are not ‘doing’ something is awful as they wind each other up and Dinky quickly becomes aggressive as she can’t cope with the way he can be full on- not that she isn’t the same! Because she is! He just doesn’t react as often as she does, but he can be just as aggressive. The main thing is we both understand why each others child is the way they are and we don’t take offence to it, but it does make outings 100 times harder as Dinky is no longer in complete control. She can’t dictate which rides we go on and in which order, she can’t always sit where she wants or have what she wants as we have to accommodate the other child. Seeing him medicated for ADHD and seeing dinky next to him, I’m more and more certain that she does have ADHD and I have agreed to trial medication, however getting hold of the doctor who suggested I consider medication is another story.

I just want to get to a point where we can get on with life in a more positive manor because right now (and for the last year) all I have done is chase my tail and chase people whose job it is to be on top of things. But it is harder for them to do this when they just see ‘CHILD-A08’ under a pile of files with different names and different children and parents all wanting them to see that their children are not ‘CHILD-B99’ or ‘CHILD-C03’.

These are our lives and the lives of our children in the hands of 9-5 ers.

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Pblogger

Thoughts on the crossroads of law, politics and society - for when 140 characters just won't do. This blog contains general information and commentary on legal matters. It is not intended to provide legal advice. This blog discusses the law in England, unless otherwise stated.

Hello, my name is Julia and I’m an adult living with a diagnosis of Pathological Demand Avoidance (PDA). I also have a diagnosis of ADHD and Psychotic Episodes. PDA is a lifelong Pervasive Developmental Disorder and was first described by the late Prof. Elizabeth Newson in 1980. PDA is an Autistic Spectrum Disorder (ASD). Despite PDA being older than me (just) there are still massive gaps in its recognition, peoples’ understanding and its diagnosis by professionals. I’m one of the lucky ones and this is my story…….